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Fighting SSI/SSD

A

anonymous

New member
My husband has CF and we have been fighting SSI/SSD and finally are scheduled for a hearing in 3 months. Does anybody have advice as to how to WIN? I know it sounds pathetic, but I know he's disabled, he knows, his doctor says it, but they still denied it 3 times. Anything anybody can remember from their own case?

Julie
 
A

anonymous

New member
I'm assuming you are using an atty to fight this? If you win the case, they would get 25% of the settlement. I am currently getting ready to file for SSDI and I have heard from the social worker at the CF Clinic that a lot of times, the people reviewing the info just don't know what CF is, so you have to be very detailed in descriptions of daily life, etc & basically tell the worst case scenerio. What angers me is that others I know are drawing disability & spending their checks on beer/cigarettes & CFers have a real case & would use any resources to better ourselves, yet we have to fight to get it.
 
M

Mockingbird

New member
Hello, Julie. It is extremely frustrating, I know. I've had my own battles with my insurance company and the government. The only thing that saved me is my doctor wrote a letter to the insurance company explaining to the I cannot afford to live without insurance. (It is my parent's insurance company, and they were going to cut me off when i was twenty-one) Now, the insurance company finally admits I have a disability, and I don't have to worry about insurance as long as I don't get married. So, as long as I don't fall in love, I'll be okay. =-)
I also know someone else who was able to get benefits from SSI... or maybe it was SSD, I forget. Anyway, it takes a long time, and it seems like nobody there is listening or cares, but it is not impossible, and I know if you keep at it, eventually you will reach someone who realizes you and your husband need help. All any of us can really do is keep hoping and keep trying.
I don't rally have any advice to give, except involve your cf clinic as much as possible. At least I know all the ones I have been to have always been willing to help with things like that. I know it doesn't help at all, but I'll b here hoping for you. Take care, okay?

Jarod
22 w cf
 
A

anonymous

New member
I think it's all luck of the draw. I really hate to say that but I have no explanation of what happened with me. The wierdest thing happened when I filed. I filed on Sept 9 over the phone. I was told like everyone else a min of 3 months before I found out. I also was told by my cf clinic I would be denied the first couple of times and to just get an attn after the first denial and I would be sure to get it. 2 weeks later my cf nurse called and asked if I knew a certain name and said they were asking about my last breathing test. They identified themself as from Soc Sec. I told her I had filed but just mailed my papers so they could get my dr. records the day before. So I was a bit concerned that someone was calling for my test results when I knew they hadn't recieved my med release info yet. Anyway the next day my case manager called and said I was accepted temporarily meaning they were going to pay me while they review my case. I was AMAZED to say the least. I asked her why?. Because I thought maybe I'm worse than I think. She said sometimes they just do that. I still don't understand how they review cases and decide someone's getting it and another not. I have been off work since March as my capacity is only 40%. I wish I could help you. I have disabilty from my job and the company that does it says she has never heard of them paying while they review the case. I do know when your filing tell them everything! Espeically the bad days and if someone helps you, give them the # so they may talk to them as well. My mom and boyfriend help me. Even if I don't want them to. Ha! But don't get me wrong I'm very greatful because of the fact I don't know if I will ever get to go back to work. But I still feel funny because I know soooo many other people also deserve it and get denied. Like Jarod said involve your cf dr. But I also gave all my dr's I have been to in the last couple years. I have a private ins and called them for a print out of all the visits they paid for so I would have dates and resons for visits. That was so extremely heplful as I go to the dr so much I coluldn't tell you why and when. So that was great to have. It also showed test that I had. I can't think of anything else that was speical that I did. But I will be pulling for you. Thanks! Eva <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
A

anonymous

New member
Eva,
Do you mind if I ask you what state you're in? Do you think that has anything to do w/ the "temporary" coverage?
 
A

anonymous

New member
I filed a few months ago for the second time. The first time I was denied. This time I was requested for a medical exam which went very well last week. The state doctor told me "at least you have a case and history" (compared to everyone else in there!). The med exam made me feel like I'm 1 step closer to getting it. If I get denied this time I'll request a hearing.
Crossing my fingers. Good luck on your hearing too!!

Emily 22 pwcf from Detroit
 
A

anonymous

New member
We started the Social Security process 2.5 years ago, got denied twice, appealed it twice and finally requested a hearing. That was last April (2003). I am active duty military and my husband is the one with CF, so recently we moved from WA to CA. We had to transfer our case because we couldn't afford to fly back to WA. Luckly, we are keeping our same attorney and SS will pay for him to fly from WA to CA for the hearing. We expect to be waiting another 3 months for a hearing (it's already been 18 months since we requested a hearing). His PFT's show his lung capacity was 60-65%, and now 6 weeks later it's back up to 80-85%. But he had an xray 6 weeks ago and his culture was growing some stuff so the doc put him back on cipro and TOBI and advair. The xray he had a few days ago was worse than the one 6 weeks ago. So now the doctor wants a CAT scan. My husband is fairly healthy but has a hard time sleeping but did a sleep study and does not have sleep apnea, he has his exaserbations, coughing attacks that result in vomitting and coughing up blood a few times a week. He can only "work" around the house and do his online schoolwork for a few hours at a time before he needs to rest (usually a 2 hour nap) and he eats every 2-3 hours.
I want to go in with all the convincing arguemtns and statments as possible. We do have an attorney and he actually seems to understand a lot of the CF stuff, and it he doesn't he asks questions. Has anybody had to go to a hearing? If so I am wondering what kinds of questions they asked you, what kind of stuff that you and or an attorney presented (journals, sleep logs...) that you feel might have helped with the case. ANYTHING would be welcomed!

Julie
 
A

anonymous

New member
Also, to add to my above post. Insurance isn't currently and issue (I am active duty military) but they won't cover ensure shakes for my husband so I am trying to get him on Medi-cal (CA's medicaid program). Come to find out that since we have a social security case going, they can't open a medi-cal case on us until the social security case closes. AAAAAAAaaaaaaaaaaaaaaaaaahhhhhhhhhh. Any help would be appreciated.

Julie
 
A

anonymous

New member
I live in Michigan. I am also on a health care called " children's speical health care" it pays for all my prescriptions. I don't know if you all have it in your state but call your local health dept. to ask. I pay $20 a month and it is such a blessing. I have private ins for all my dr visits. Sometimes they call it crippled childrens health care. But it's not just for children because I'm 35. I just got on it 2 yrs ago but before that my copays were horrible!!!! to say the least. Hope this helps some of you. Eva
 
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anonymous

New member
To the post I didn't understand your other question. Do I think "what" has anything to do with the temp coverage? Sorry. Eva
 
A

anonymous

New member
I asked do you think "that" has anything to do w/ your case, meaning I wondered if your location (state) had anything to do w/ getting temp coverage. I found out today that it's a federal program, not a state program, so states have nothing to do w/ it. Ignore my question!<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
A

anonymous

New member
As I stated before, insurance ins't a problem for us. I am active duty and he gets seen a that naval hospital and they have a CF specialist. We pay nothing. The only thing we have a problem wiht is the insurance WON'T cover his boost shakes every month, but I am working on that one. My Biggest concern and the topic of my post was for ANYTHING about SSI/SSD hearings. Does ANYONE out there who has had to take it as far as a trial remember the key points that seemed to be the big focus, do you remember what point (and what things were presented) that you think helped you win or loose the case. In the state of WA we got food stamps, cash assistance and medicaid. In california we get none of that because I make $13 over the limit, and CA doesn't take deductions (like rent, medical necessity car, non covered medical expenses..) into consideration unless a person is disabled according to Social security standards. Apparently it isn't good enough anymore that a doctor or two or three says that he is. If there is anything that might help with the s.s. case, please let me know. Thank you

Julie
 
A

anonymous

New member
As I stated before, insurance ins't a problem for us. I am active duty and he gets seen a that naval hospital and they have a CF specialist. We pay nothing. The only thing we have a problem wiht is the insurance WON'T cover his boost shakes every month, but I am working on that one. My Biggest concern and the topic of my post was for ANYTHING about SSI/SSD hearings. Does ANYONE out there who has had to take it as far as a trial remember the key points that seemed to be the big focus, do you remember what point (and what things were presented) that you think helped you win or loose the case. In the state of WA we got food stamps, cash assistance and medicaid. In california we get none of that because I make $13 over the limit, and CA doesn't take deductions (like rent, medical necessity car, non covered medical expenses..) into consideration unless a person is disabled according to Social security standards. Apparently it isn't good enough anymore that a doctor or two or three says that he is. If there is anything that might help with the s.s. case, please let me know. Thank you

Julie
 
A

anonymous

New member
Anyone can go to the Social Security Administration website and read the criteria for disability determinations. http://www.ssa.gov

This link will take you right to the POMS (Program Operations Manual System) which are the rules that the workers must use for the different programs operated by Social Security. http://policy.ssa.gov/poms.nsf/aboutpoms

Click on the link to the Table of Contents and then go to the DI manual (Disability Insurance)

Read to your hearts content!

And the process that one person described where she was allowed to receive payment while a final determination was made is called "presumptive disability" See DI 23535.000 Presumptive Disability/Presumptive Blindness (PD/PB) Cases
 
A

anonymous

New member
Anyone can go to the Social Security Administration website and read the criteria for disability determinations. http://www.ssa.gov

This link will take you right to the POMS (Program Operations Manual System) which are the rules that the workers must use for the different programs operated by Social Security. http://policy.ssa.gov/poms.nsf/aboutpoms

Click on the link to the Table of Contents and then go to the DI manual (Disability Insurance)

Read to your hearts content!

And the process that one person described where she was allowed to receive payment while a final determination was made is called "presumptive disability" See DI 23535.000 Presumptive Disability/Presumptive Blindness (PD/PB) Cases
 
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